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kmach33
Regular Member


Date Joined May 2008
Total Posts : 21
   Posted 5/30/2008 9:56 AM (GMT -6)   
I am new to healingwell and have spent some time looking around in the forums and noticed quite a few people are using Remicade.  I am currently on Colozal, 6-MP, and Canasa, but have been struggling still for the past 8 months since I added the 6-MP to my daily meds, which I was skeptical about, but no side effects as of now.  This has helped to a point where I don't have diarrea anymore, just soft but formed stools, but am still going 4-6 times a day with urgency.  The urgency is what makes this disease the worst.  My last conversation with my doctor included that the next step would be remicade.  I have read horror story's about complications due to remicade (increased chance of lymphoma, liver problems not detected, death), especially when used along with drugs such as 6-MP.  From reading other posts and seeing so many people on remicade, I am somewhat less worried about taking this next step, but has anyone had more of the serious type complications that are possible due to remicade?  Are the things I'm finding on remicade simply b/c those are the ones written and posted about the most, not the benefits? 
 
I'm hoping that healingwell will help in my struggles and that I will be able to help others.  From some things I've read so far I'm excited to try different things in hopes of bringing myself into remission.  It's been a couple years since I've felt good.   
 
Thanks.
23yr old male, diagnosed October 2003
Medication:
9 Colozal/Day, 1.5 tabs 6-MP, 1000mg Canasa
Supplements:
1200mg fish oil/omega3 capsules/3x daily, 2 probiotics capsules/daily, 1mg folic acid


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/30/2008 12:10 PM (GMT -6)   

Hi Kmach33, and welcome to Healingwell. I was so sick with the UC, that I could barely go anywhere let alone work. My doc was very aggresive trying to get me onto Remi, and I'm so glad he did. I've been on it for three years and have not had any side effects and feel great. Only every so often I have a little blip such as fatigue, loose stools, or some belly aches, but other than that I can pretty much eat anything or go anywhere feeling confident. I have a busy job and travel quite a bit, and I've never had a problem with that; a couple of times I've even had an infusion the day before I left on a trip; one time to Europe! So it's been great for me, again, no side effects as of yet....but this is my story; others haven't fared as well. If you would like more posts to read, you can go above the blue control panel bar and Google Custom Search for Remicade. Oh....I was on Azthirioprine (Imuran) for a while, but my doc took me off as a caution because of the increased chance for Lymphoma. I do have my blood checked every six weeks; so far, so good....

Again, welcome to the forum!


Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 5/30/2008 3:48 PM (GMT -6)   
I've been on all of them, including 6mp and nothing helped me like Remicade. I have not suffered any more side effects than 6mp. I don't think your doc will keep you on 6mp AND Remicade but I could be mistaken. Remicade really works the best for me, with steroids added in as needed. I would definitely consider it if you're still having urgent bm's all day.

34 year old female
Dx'd 5 years ago
Current Meds: Remicade/6 weeks, Prednisone, Prevacid, Sustenex, Lialda, Lexapro, Synthroid, Iron, vitamin, Fish Oil
Expecting first child 12/08 via gestational surrogate


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/30/2008 4:21 PM (GMT -6)   
Most GI's now I think are stopping the immunosuppressants (Imuran and 6-MP) when starting Remicade, because the lymphomas reported were in people receiving both drugs at the same time.

I was on Colazal, Imuran and steroids and was still in the bathroom 10 to 20 times a day, bleeding and having a lot of pain. I would drag myself to work then come home and collapse, rest so I could go back to work the next day. I had no life and my existence was full of pain. Within a month of starting Remicade I began to feel noticibly better. Now I have a normal life, good energy and can eat and do whatever I like. I'm off the steroids that were slowly killing me and I feel great.

Everyone has to decide for themselves what treatment to follow, but this course has worked out well for me for the past two years.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


UChick
Regular Member


Date Joined Jun 2006
Total Posts : 173
   Posted 5/30/2008 4:50 PM (GMT -6)   
Love Remicade!!!!! It helped me a lot. I never did take the full treatment course because the couple of times I took it the Remicade stopped my flare.
Age 18
Diagnosed September '01 : Remission since July '02
Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Centrium A-Z multi-vitamin
Took Remicade 3 times, BIG FAN!!!!
Have Taken: Prednisone, Flagyl, Zantac (for acid reflex)


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/30/2008 9:16 PM (GMT -6)   
I'd rather live a full active life for 50 years, then live a pathetic life chained to the toilet for 100.

That's just my way of looking at it.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.

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